Decision-making and ante-natal screening for sickle cell and thalassaemia disorders : To what extent do faith and religious identity mediate choice?

When making decisions about prenatal diagnosis, couples not only draw on their understanding of the condition but also broader aspects of their cultural identity. This article looks at how faith and religion mediate attitudes towards screening, prenatal diagnosis and termination of pregnancy for sickle cell and thalassaemia disorders. The article specifically reports on a qualitative study, which used focus groups from a variety of faith communities (Muslim, Sikh, Hindu and Christian), at risk of haemoglobin disorders, living in England. Our findings suggest that the decision about whether or not to have diagnostic testing generally related to attitudes towards the termination of pregnancy. The consequences of the condition were as important as religious beliefs to most people. More generally, faith beliefs emerged as negotiable and contingent: realized within a broader moral framework. Religion was felt not to be prescriptive and reproductive decisions were seen as personal. When making decisions, people utilize faith within a broader context of individual, family and social relationships

Conversation Analytic Role-play Method in Antenatal Screening Conversations (The Convene Study) - Antenatal appointment transcripts

This dataset contains transcripts of 27 entire antenatal appointments, based on 27 audio recordings. A convenience sample of midwives and pregnant woman (aged ≥ 16 years) attending their first antenatal booking appointment was obtained within GP practices and hospital clinics. 27 women participated (10 women also attended with their partner who agreed to participate), along with 12 midwives. All present at the appointment gave informed consent, and the researcher remained outside of the clinic room when the recordings were obtained

Obstetric professionals’ perceptions of non-invasive prenatal testing for Down syndrome: clinical usefulness compared with existing tests and ethical implications

Background: While non-invasive prenatal testing (NIPT) for fetal aneuploidy is commercially available in many countries, little is known about how obstetric professionals in non-Western populations perceive the clinical usefulness of NIPT in comparison with existing first-trimester combined screening (FTS) for Down syndrome (DS) or invasive prenatal diagnosis (IPD), or perceptions of their ethical concerns arising from the use of NIPT. Methods: A cross-sectional survey among 327 obstetric professionals (237 midwives, 90 obstetricians) in Hong Kong. Results: Compared to FTS, NIPT was believed to: provide more psychological benefits and enable earlier consideration of termination of pregnancy. Compared to IPD, NIPT was believed to: provide less psychological stress for high-risk women and more psychological assurance for low-risk women, and offer an advantage to detect chromosomal abnormalities earlier. Significant differences in perceived clinical usefulness were found by profession and healthcare sector: (1) obstetricians reported more certain views towards the usefulness of NIPT than midwives and (2) professionals in the public sector perceived less usefulness of NIPT than the private sector. Beliefs about earlier detection of DS using NIPT were associated with ethical concerns about increasing abortion. Participants believing that NIPT provided psychological assurance among low-risk women were less likely to be concerned about ethical issues relating to informed decision-making and pre-test consultation for NIPT. Conclusions: Our findings suggest the need for political debate initially on how to ensure pregnant women accessing public services are informed about commercially available more advanced technology, but also on the potential implementation of NIPT within public services to improve access and equity to DS screening services

Canagliflozin and renal outcomes in type 2 diabetes and nephropathy

BACKGROUND Type 2 diabetes mellitus is the leading cause of kidney failure worldwide, but few effective long-term treatments are available. In cardiovascular trials of inhibitors of sodium–glucose cotransporter 2 (SGLT2), exploratory results have suggested that such drugs may improve renal outcomes in patients with type 2 diabetes. METHODS In this double-blind, randomized trial, we assigned patients with type 2 diabetes and albuminuric chronic kidney disease to receive canagliflozin, an oral SGLT2 inhibitor, at a dose of 100 mg daily or placebo. All the patients had an estimated glomerular filtration rate (GFR) of 30 to <90 ml per minute per 1.73 m2 of body-surface area and albuminuria (ratio of albumin [mg] to creatinine [g], >300 to 5000) and were treated with renin–angiotensin system blockade. The primary outcome was a composite of end-stage kidney disease (dialysis, transplantation, or a sustained estimated GFR of <15 ml per minute per 1.73 m2), a doubling of the serum creatinine level, or death from renal or cardiovascular causes. Prespecified secondary outcomes were tested hierarchically. RESULTS The trial was stopped early after a planned interim analysis on the recommendation of the data and safety monitoring committee. At that time, 4401 patients had undergone randomization, with a median follow-up of 2.62 years. The relative risk of the primary outcome was 30% lower in the canagliflozin group than in the placebo group, with event rates of 43.2 and 61.2 per 1000 patient-years, respectively (hazard ratio, 0.70; 95% confidence interval [CI], 0.59 to 0.82; P=0.00001). The relative risk of the renal-specific composite of end-stage kidney disease, a doubling of the creatinine level, or death from renal causes was lower by 34% (hazard ratio, 0.66; 95% CI, 0.53 to 0.81; P<0.001), and the relative risk of end-stage kidney disease was lower by 32% (hazard ratio, 0.68; 95% CI, 0.54 to 0.86; P=0.002). The canagliflozin group also had a lower risk of cardiovascular death, myocardial infarction, or stroke (hazard ratio, 0.80; 95% CI, 0.67 to 0.95; P=0.01) and hospitalization for heart failure (hazard ratio, 0.61; 95% CI, 0.47 to 0.80; P<0.001). There were no significant differences in rates of amputation or fracture. CONCLUSIONS In patients with type 2 diabetes and kidney disease, the risk of kidney failure and cardiovascular events was lower in the canagliflozin group than in the placebo group at a median follow-up of 2.62 years

The unfolding method to explore health-related quality of life constructs in a Chinese general population

Objectives: Health-related quality of life (HRQOL) is a complicated concept that can be measured using multiple health items. Although HRQOL is closely associated with people's subjective assessment of their own health, a limited number of studies have investigated which health items are considered most important and relevant by the general population. Even fewer empirical studies have investigated how HRQOL is understood in non-Western populations. This study used multidimensional unfolding analysis in a Chinese general population to explore the constructs of HRQOL. Methods: A scoping review of Chinese generic HRQOL measures and a series of qualitative interviews produced a list of 42 potentially important health items in a Chinese cultural setting; 110 Chinese participants in face-to-face interviews ranked the health items from most important to least important. Responses were coded into a rectangular 110 × 42 matrix, and multidimensional unfolding was conducted to analyze participants’ preferences for health items. Results: It was found that demographic characteristics and one's health condition affected views of HRQOL. Meanwhile, 3 health items were considered to be most important across the whole sample: sleep quality, body constitution, and spiritual appearance. Conclusion: This study used a novel approach to explore how people coming from a Chinese cultural setting may perceive HRQOL and which aspects of HRQOL are most important to them. The study shows that multidimensional unfolding is a feasible approach to assess preferences in a general population. Future studies using this approach are recommended to further explore the constructs of HRQOL in other general populations

Is advice incompatible with autonomous informed choice? Women’s perceptions of advice in the context of antenatal screening: a qualitative study

Abstract Background  Patient autonomy in antenatal screening is a high priority for policy developers in many countries. Objective  This paper presents women’s understandings of how health professionals should facilitate informed screening choices with an emphasis on their understandings of autonomy and advice. Design, setting and participants  The study was carried out in 2009 in the UK, using a qualitative approach. Ninety-eight participants of African, British White, Caribbean, Chinese and Pakistani origin had semi-structured interviews, which were analysed using framework analysis. Results  Four themes were identified during the analysis: ‘Meanings of advice in antenatal screening: the advice continuum’, ‘Recognition of the role of health professionals in decision making’, ‘Understandings of advice in the context of autonomous decision making’ and ‘Reasons given for wanting advice’. Women said they valued advice from health professionals to make decisions about antenatal screening, but their understandings of ‘advice’ ranged from information giving only to direction about screening choices. Conclusion  Many women wanted health professionals to support the process of making informed choices by engaging in discussion and did not see advice as incompatible with making autonomous choices. However, some women wanted direction about whether to have a screening test or not, something which policy and guidelines explicitly prohibit. This may cause an ethical dilemma for health professionals who are required to both support women’s preference for care and adhere to a policy of non-directiveness. Further clarification is needed on how health professionals should support the process of making informed choices when women ask for clear direction on screening choices

Exploring subjective constructions of health in China : a Q-methodological investigation

Background: With an increasing awareness of people's satisfaction and feeling, health-related quality of life (HRQoL) has become an essential aspect of measuring health. HRQoL is fundamentally a foreign concept introduced to China from the West. While a growing number of studies applied western HRQoL measures, few content validity tests examined the legitimacy of applying Western developed HRQoL measures in a Chinese cultural setting. If there are distinct differences in health conceptualisation between China and the West, it can be argued that those western measures may fail to ask the most appropriate and important questions among a Chinese population in assessing health. As a limited number of studies have investigated Chinese people's understandings of health, this study aimed to explore how health is defined and described in China. Methods: A Q-methodological study was conducted to explore subjective constructions of health among Chinese participants. A scoping review of Chinese generic HRQoL measures, supplemented by a series of qualitative interviews conducted in China, produced a list of 42 statements representing aspects of health considered as being important in a Chinese cultural setting. Chinese participants in face-to-face interviews ranked and sorted these statements. Data were analysed to identify clusters of participants who shared a similar perspective, using a by-person factor analysis procedure. Results: 110 Chinese participants with various demographics characteristics completed sorting interviews. Five independent factors emerged: (I) "Physical independence and social interaction skills"; (II) "Physical health"; (III) "Sensations and feelings"; (IV) "Lifestyles"; (V) "Learning and working abilities". Conclusions: The Q-study showed that many health statements were rated highly as most important by a diverse range of Chinese participants but were not covered in the commonly used Western HRQoL measure EQ-5D. It then suggests that the EQ-5D descriptive system might need modification to improve its capacity to measure health status in China. The study thus raises a general question as to how appropriate the Western-developed HRQoL measures are when used to assess health in a significantly different cultural setting

'All is done by Allah'. Understandings of Down syndrome and prenatal testing in Pakistan

Understanding the psychosocial impact of a congenital condition such as Down syndrome on affected individuals and their family requires an understanding of the cultural context in which they are situated. This study carried out in 2008 used Q-Methodology to characterize understandings of Down syndrome (DS) in Pakistan in a sample of health professionals, researchers and parents of children with the condition. Fifty statements originally developed for a UK study and translated into Urdu were Q-sorted by 60 participants. The use of factor analytic techniques identified three independent accounts and qualitative data collected during the Q-sorting exercise supported their interpretation. In two accounts, the 'will of God' was central to an understanding of the existence of people with DS although perceptions about the value and quality of life of the affected individual differed significantly between these accounts as did views about the impact on the family. The third account privileged a more 'scientific worldview' of DS as a genetic abnormality but also a belief that society can further contribute to disabling those affected. Attitudes towards prenatal testing and termination of pregnancy demonstrated that a belief in the will of Allah was not necessarily associated with a rejection of these technologies. Accounts reflect the religious, cultural and economic context of Pakistan and issues associated with raising a child with a learning disability in that country.Pakistan Down syndrome Prenatal testing Abortion Q-methodology Islam Religion Children